Hoarding and Homelessness

1. Hoarding and Homelessness Randy O. Frost, Ph.D. Harold and Elsa Siipola Israel Professor of Psychology Smith College Jonathan Kessler, LCSW Team Leader/Coordinator HUD/VASH Housing First ACT Team NY Harbor Healthcare System, Manhattan Campus

2. Presenters Randy O. Frost is the Israel Professor of Psychology at Smith College. He has published numerous articles and books, including Stuff: Compulsive hoarding and the meaning of things, a New York Times Bestseller and a finalist for the 2010 Books for a Better Life Award. His latest book, TheOxford Handbook of Hoarding and Acquiring was published in 2014. He has received a Lifetime Achievement Award by the Mental Health Association of San Francisco, and a Career Achievement Award from the International OCD Foundation. Jonathan Kessler, LCSW, is the team leader and coordinator of the HUD/VASH Housing First ACT Team for NY Harbor Healthcare System. He has worked at the VA since 2010. He received his MSW from Hunter College School of Social Work, and trained in couples and family therapy at the Ackerman Institute for the Family in NYC.

3. Road map • What is hoarding? – DSM-5 • Why do people hoard? • Treatment Considerations

4. Hoarding Disorder: DSM-5 Criteria A. Persistent difficulty discarding or parting with possessions, regardless of their actual value. B. This difficulty is due to a perceived need to save the items and distress associated with discarding them. American Psychiatric Association, 2013

5. C. The symptoms result in the accumulation of possessions that congest and clutter active living areas and substantially compromise their intended use. If living areas are uncluttered, it is only because of the interventions of third parties (e.g., family members, cleaners, authorities). American Psychiatric Association, 2013

6. D. The hoarding causes clinically significant distress or impairment in social, occupational, or other important areas of functioning (including maintaining a safe environment for self and others). American Psychiatric Association, 2013

7. E. The hoarding is not attributable to another medical condition (e.g., brain injury, cerebrovascular disease, Prader-Willi Syndrome). • F. The hoarding is not better accounted for by the symptoms of another DSM-5 disorder (e.g., hoarding due to obsessions in Obsessive-Compulsive Disorder, decreased energy in Major Depressive Disorder, delusions in Schizophrenia or another Psychotic Disorder, cognitive deficits in Dementia, restricted interests in Autism Spectrum Disorder). American Psychiatric Association, 2013

8. Specify if: • Good or fair insight: Recognizes that hoarding-related beliefs and behaviors (pertaining to difficulty discarding items, clutter, or excessive acquisition) are problematic. • Poor insight: • Absent insight: American Psychiatric Association, 2013

9. Specify if: • Good or fair insight: • Poor insight: Mostly convinced that hoarding-related beliefs and behaviors are not problematic despite evidence to the contrary. • Absent insight: American Psychiatric Association, 2013

10. Specify if: • Good or fair insight: • Poor insight: • Absent insight (Delusional beliefs about hoarding): Completely convinced that hoarding-related beliefs and behaviors are not problematic despite evidence to the contrary. American Psychiatric Association, 2013

11. Specify if: “With Excessive Acquisition: If symptoms are accompanied by excessive collecting or buying or stealing of items that are not needed or for which there is no available space.” American Psychiatric Association, 2013

12. Hazards of Hoarding • Poor Sanitation • Mobility Hazard • Blocked Exits • Community Cost • Fire Hazard • Homelessness

13. COMORBID DISORDERS IN HD

17. Why do people hoard? The Cognitive Behavioral Model

18. Vulnerabilities Information Processing Deficits Meaning of Possessions Learned Patterns of Collecting, Saving, & Storing

19. Vulnerabilities • Biological • Emotional Dysregulation • Poor Health • History of Loss/Trauma • Distorted Beliefs • E.g., perfectionism

20. Information Processing Deficits • Attention • Categorization • Memory • Perception • Association • Complex Thinking Decision-making Difficulties

21. The Meaning of Possessions • Sentimental • Identity • Connection & Opportunity • Safety & Comfort • Instrumental • Utility • Responsibility • Intrinsic • Aesthetic sensitivity

22. Learning Processes • Positive reinforcement (positive emotions) • Negative reinforcement (negative emotions) • No opportunity to test beliefs & appraisals (avoidance) • No opportunity to develop alternative beliefs (avoidance)

23. Treatment Considerations

24. Insight? • Lack of awareness of illness • Clutter Blindness • Defensiveness • Overvalued beliefs about possessions

25. Social Context • Language • TV • Family

26. Specialized Treatment for Hoarding • Assessment and case formulation • Motivational enhancement throughout • Restricting acquiring • Skills training • Challenging maladaptive beliefs & attachments Steketee & Frost, 2013

27. Restricting Acquiring • Inserting context into acquiring decisions • Teaching tolerance for the urge to acquire

28. Skills Training • Organizing • Problem solving • Decision making

29. Challenging Maladaptive Beliefs & Attachments • Identify problematic beliefs/attachments • Create hypotheses about them • Challenge beliefs & attachments • cognitive strategies • behavioral experiments/exposures • Discuss beliefs during discarding exposures

30. Behavioral Experiment: Consider Discarding • Identify hypothesis to be tested • Rate initial distress & predict duration • Conduct the experiment (not acquire, discard) • List thoughts • Evaluate thoughts • Re-rate distress • Discuss outcome of experiment

31. Behavioral Test of Hoarding Predictions(top of lost board game box) • Prediction 1: “If I throw this away, it will feel like death.” • Prediction 2: “If I throw it away, I will feel this way (like death) forever.”

32. Outcome of Predictions • One minute after discarding • SUDS rating at 100, but “It does not feel like death.” • 24-hours after discarding • SUDS rating at 10. “It doesn’t bother me much at all.”

33. Conclusions and New Hypotheses • Conclusion - Neither prediction came true. • New Hypotheses • The thought of throwing things away is worse than the doing of it. • If I throw something away that I am deathly afraid of discarding, the bad feeling won’t last as long as I think.

34. Outcomes:Treatment Responders (%) Steketee et al., 2010; Muroff et al., 2011

35. Conclusion • Hoarding is a chronic and complex disorder • Gift • Recognition of potential & opportunity • Appreciation of physical world & sense of responsibility • Curse • Living in a landfill • Collecting life without living it • Aesthetics gone Awry • Cure?

36. Homelessness and Hoarding:Case study Jonathan Kessler, LCSW Team Leader/Coordinator HUD/VASH Housing First ACT Team NY Harbor Healthcare System, Manhattan Campus

37. Housing First ACT Team • Higher level of care within HUD/VASH • Multidisciplinary approach: NP, RN, SW, Veteran Peer Specialist • Informed by evidence-based practice models • Focus on chronic homelessness, severe and persistent psychiatric and medical conditions, and co-occurring substance abuse • Weekly visits, clinical crisis support, advocacy, skills building • Maintains care continuum between VA and community • Goals: increase housing sustainability, prevent/reduce hospitalization, and improve overall well-being

38. Case Overview • 58 year old single divorced, Caucasian female Army vet, ‘77-’80, and ‘92-’96 navy reservist • Post military employment history as EMT • Currently disabled, receiving SSD • Diagnosed with Schizoaffective D/O, Anxiety, Depression, obesity, COPD, leg edema • Accepted into HUD/VASH program after x1 year homelessness resulting from death of both parents, with whom she lived, and loss of family home • History of multiple hospitalizations, long use of PRRTP day program • Significant losses of family, home, possessions, identity • Transferred to HUD/VASH Housing First ACT Team 2015

39. What We Encountered in the Veteran’s Apartment • Clutter rating of 5-6, based on presentation images • Stacks of unopened boxes from regular Amazon Prime and QVC purchases, sometimes in duplicate, of household appliances, exercise equipment, diet supplements, etc • A 2-3 foot high barricade of food wrappers and containers, surrounding the reclining chair where she sits most of day • Piles of garbage next to bags of garbage and overflowing bin • Overflowing cat litterbox, urine soaked carpet, a dead decomposing mouse in the hall • Roach, fly and mouse infestations • A waist-height wall of belongings, boxes, papers, etc., around the perimeter of the apartment • A stagnant oppressive odor – “feels like you’ve stepped into a tropical climate”

40. Countertransference and Other Barriers to Engagement • Difficulty staying in the apartment for any sustained period of time • Strong emotional and physical reactions, including: resistance, revulsion, and physical nausea, headaches during visits • Ethical dilemma of exposing team to health/respiratory concerns during visits • Discouragement and hopelessness of staff in the onslaught of accumulating objects and refuse

41. Relational Obstacles to Clinical Interventions by Team • Vet finds team visits intrusive/disruptive • Feels judged or criticized, embarrassed, defensive • Conflicting definitions of problem, experience of apartment • Varying levels of willingness among team around extent of involvement • Struggle to summon motivation, emotional buy-in for treatment plan and goals • Sense of failure at not completing agreed tasks

42. Case Conceptualization: Contributing Factors to Veteran’s Hoarding Behavior • Loss of parents in close succession • Shame of losing family home and lifetime of belongings after parents’ passing • Trauma of illness onset • Loss of sense of self and identity as a working person • Health issues: Limited mobility secondary to COPD and leg edema • Mental health issues: Generalized Anxiety Disorder (GAD), Depression, Schizoaffective D/O

43. Team’s Clinical Interventions • Alternating staff for visits – benefits and drawbacks • Ethics committee consult RE veteran/staff safety • Processed visits and strategized next steps in supervision • Team building exercises to develop frustration tolerance around handling setbacks • Readjustment of team agenda and goals towards a more veteran-centered and collaborative re-definition of problem to consider benefits and drawbacks of behavior

44. Team’s Clinical Interventions, Cont’d • Exploration of historical/aspirational connection and symbolic meaning of objects and accumulating behavior • Identifying varying values of possessions, what must stay, what can go • Limited collaborative cleaning to practice discarding, and partialized cleaning assignments between visits, based on vet’s preference

45. Current Status of Case • Hoarding behaviors continue to persist, though less intense • Adult Protective Services subsidized bi-annual cleanings • Engagement with local church collaboration for cleaning and shopping assistance • Escorts to medical psychiatric appointments to refer vet for home health care • Establishment of a pool trust for HHC, secondary benefit of limiting funds and restricting acquiring • Home attendant provides witness and may curtail acquiring behavior • Improved appointment attendance and capacity to leave apartment with HHC assistance • No current threat of eviction

46. Summary of Team Interventions to Address Hoarding • Veteran-centered approach to problem definition and goals • Psychoeducation • Addressing safety issues • Guided exploration of emotional, cognitive and behavioral aspects • Collaborative cleaning practice • Partialize cleaning assignments • Enlist family, community, and faith-based supports • Referrals to adult advocacy agencies • Rep payee/guardianship/pool trust